Nothing challenges a mother's mental health like a high-risk pregnancy.

May is Mental Health Awareness month

I am so touched by the interest expressed in my newsletter and all the new subscribers, since my timeline post went slightly viral. What a community - your comments were awesome. Welcome to you all! I am extremely grateful for your presence. To help you get to know me a bit better I am recollecting my beginning story - to be a doctor and a mom.

It was August 1983. After finishing my three-year neonatology fellowship in June, I found myself attending the neonatal intensive care unit with one of my fellowship training professors. It was comforting that our NICU schedule paired together less experienced attendings, like me, with more seasoned neonatologists. Trevor was a brilliant, British-trained physician who performed sophisticated research on lung surfactant, and I admired both his research and teaching. He was tall and handsome, reticent and thoughtful. Having worked with him in the NICU many times before, I knew how he felt about critical care, living, and dying. He always chose living, sometimes opting to continue life support even though a case might appear to be hopeless.

After I completed my fellowship training, I felt differently. I had witnessed a number of babies who were too critically ill and too close to death to survive. Their birth defects were inoperable, or their overwhelming infection spread to their brains, or their complications were too severe to predict any sort of functional life. I was well-trained, but still untested on my own as an attending in the NICU. Although everyone in the NICU knew that I was a competent fellow, I didn’t feel competent yet as a neonatologist. I still needed to prove myself to be excellent. Trevor and I conducted daily rounds that month, each with our own team of residents and fellows, and each of us attended twelve to fifteen critically ill babies every day.

My team had admitted a very tiny baby a few days earlier. This little baby was amazingly stable on his ventilatory support, but his parents were not alright. An hour earlier, during our rounds, his nurse interrupted to report that they needed to talk. After I finished my teaching rounds with the residents, reviewed their care on all my patients, I approached the baby’s bedside in the dimly lit, private NICU room. At once I noticed that his parents, a young couple standing arm in arm, seemed changed. The monitor softly beeped his regular heartbeats, and his blood pressure was normal. Two large catheters entered his umbilicus—his belly button—and one small IV was taped to the back of his little hand. A blood transfusion was in progress underneath the Saran Wrap blanket that covered his entire body.

The previous two days had been a whirlwind for this couple: first, her emergency admission in active labor, followed quickly by their son’s extremely preterm birth, his life-threatening small size and medical condition, and his chances of survival going forward. This mother entered L&D—labor and delivery—with premature labor and rupture of membranes at twenty-three weeks gestation. Full-term is forty weeks. She did not receive antenatal steroids (before birth) - to mature his brain and lungs; there was insufficient time. His birth occurred in the fall of 1983 before artificial surfactant was available for treating respiratory distress in preterm infants.

Their son weighed only 600 grams at birth - a little over one pound. I was aware that our NICU had very few survivors born that premature and that tiny. However, the NICU team had attended mom’s delivery two days before, and after a quick insertion of a breathing tube, whisked their baby away to the NICU for stabilization and continued care on a ventilator.

Theirs was a planned pregnancy; these parents had wanted a son desperately. They were both intelligent professionals, smart enough to handle the survival and outcome statistics that were rapidly explained to them in the L&D suite before his birth. In addition, this mother’s uncle was a physician, and he confirmed their baby’s expected poor outcome and encouraged their reluctance to provide full support.

This little boy was born below the current level of viability (at that time) which was then roughly twenty-five weeks gestation, yet here he was alive on ventilatory support, and no complications had yet arisen. That morning, his parents told me that they wanted to take their son off the ventilator. They seemed sad, but resolute.

Their request surprised me, but I was determined to help them work through their quandary. Since I had recently finished my fellowship, I wanted to provide these parents with not only a compassionate ear, but also a correct and careful clinical approach. I was hesitant to proceed in the wrong way. So, we sat together by their son’s bed and talked about their decision. I reviewed the current statistics describing his chances for survival and possible outcomes. They understood fully that most likely he would not survive; moreover, if he did, he would probably have an abnormal outcome. He had only a slim chance of normalcy. I believed that their choice was appropriate, but I knew that it was a rare set of parents who made this sort of decision early on in their child’s care. Most lacked the courage to withdraw support.

After my discussion with them, I took Trevor aside to review the present dilemma with this baby’s parents. He listened quietly for a few minutes, then paused and warned me to “counsel them to proceed at all costs.” This advice stunned me. I felt strongly that the parents’ wishes should be considered, even honored at this extreme gestational age. At this time, I was not a parent myself, but I knew enough to seriously consider, and to respect, parents’ wishes about their critically ill babies. The NICU ethicist had discussed this sort of clinical situation with us many times before.

Perplexed about how to proceed - since I disagreed with Trevor - I called the chairperson of the hospital ethics committee to seek out her guidance. Dr. Desmond was a wonderful, white-haired neonatologist who ran the developmental follow-up clinic at our hospital. She was a well-respected, talented academic. She always spoke with great passion about the outcomes of critically ill children and babies. I told her about my little patient, his parents, and my disagreement with Trevor. She encouraged me to present the case to the hospital ethics committee later that day, and I agreed to do so with great apprehension.

At Texas Children’s Hospital, the ethics committee consisted of an experienced general pediatrician, a pediatric subspecialist (usually a pediatric hematologist-oncologist), a pediatric intensive care physician, a medical ethicist, a developmental medicine specialist (the current chairperson), an experienced nurse, a parent whose child had received end-of-life care, and a hospital chaplain. Any physician or parent could convene the committee whenever conflicts arise in treatment decisions.

During lunch, I holed up in the neonatal conference room library and reviewed the outcomes of all babies born at twenty-three weeks gestation at our hospital in the prior two years - 1981 to 1983. Only two of twelve such infants survived, and those two had severe complications and were growing up with major developmental disabilities. I eagerly went to find Trevor and to recite this data to him. He listened carefully, but was unmoved, and mumbled something about “expecting outcomes to improve each year.” Then he gave me a look that made me feel like he was disappointed in me. Disappointing your attending, especially one who was your teacher, is uncomfortable, and I had not been in this position before. After looking at the two years’ worth of our data, I personally agreed with the parents’ plan to withdraw support and allow their son to die of his extreme prematurity.

Later that afternoon, I nervously presented his case to the hospital ethics committee. Everyone convened around the oval wood table in a large conference room in Dr. Desmond’s office, and the discussions I heard were both academic and realistic. I watched and listened, unsure of the outcome, but the committee voted unanimously to support the parents’ plan to remove their son from his ventilator. At that moment I was relieved and felt both empowered and justified in allowing them to make this decision.

Later that evening, his nurse helped me turn off and disconnect the infusions. We carefully loosened the tape on his nose and upper lip, and I removed the breathing tube from this precious little boy - a fetus really. I wrapped him in a soft, blue blanket, and handed him to his mother and father. His mom sat comfortably in a nearby rocking chair, surrounded by stuffed pillows, her feet propped on a low stool. Dad sat very close by her. This was the first time she held him since birth. Mom lifted him up, wrapped in his blanket, for a kiss. Both mom and dad cried and spoke gently to him. I wish that I could remember his name. It was obvious that they loved and wanted him very much.

There were no other family members available, so I asked if I could sit with them, and was honored when they agreed. He seemed comfortable in their arms while his mother stroked his little hands and face. That evening I sat there with that young couple, watching them hold their son - loving him and saying goodbye - for three hours. It was heartbreaking.

During that time, I kept thinking about the possibility that this could be me and my husband. Would we be doing the same thing? Gradually, his weak breathing stopped, then his heart rate slowed, and finally his heart stopped beating, and he died. This was undoubtedly the most difficult, excruciating decision that couple ever made. In my mind, their decision was correct - for them, but I felt drained.

After pronouncing the baby dead and signing all the necessary forms, I left the hospital and drove home to my husband. He had dinner waiting for me, and a glass of wine. I cried as I recounted the story of my day - Trevor’s comments, my disappointment with him, my nervousness going before the ethics committee, my fears about doing the wrong thing, how kind Dr. Desmond had been - all of it. He listened patiently and reassured me that those parents and I had done the right thing in deciding to let that baby go. He told me that I was brave to want to help them. I cried some more as the reality of attending such critically ill cases settled over me. Would I be up to the demands of a life in the NICU, the endless hours, the worried parents, the constant alarms, and the ethical dilemmas? My husband was three years ahead of me in training and experience, so I felt soothed by his reassurance.

About a year later, I was the young mother in premature labor at twenty-five weeks gestation, in our own L&D unit. My son might be born extremely premature and I was terrified. How could this have happened to me? Within the first year of our marriage, I unexpectedly conceived. We both wanted a baby, but since I was thirty-four at the time, I thought it would take longer. However, any joy that I felt about being pregnant was overwhelmed by my endless and terrible nausea and vomiting. I threw up every morning before work, usually able to keep down only Coca-Cola and saltine crackers. I threw up during daily rounds in the NICU because the phototherapy lights that we shined on the babies to treat their jaundice made me feel queasy.

My pregnancy proceeded along with unrelenting nausea and vomiting for twelve long weeks while I worked in the NICU full time. I survived on only crackers, peanut butter, and Coke. We were both excited when the ultrasound at eighteen weeks gestation revealed that we were having a boy. However, I found myself frightened during the amniocentesis procedure. During amniocentesis, a sample of amniotic fluid is obtained by ultrasound guidance and sent for genetic testing. Having observed an amniocentesis performed many times, I felt confident that mine would be routine. During the procedure, however, I felt anxious watching that large needle being stuck into me, and I worried that it might stick the baby.

After my nausea resolved and the genetics test returned with normal results, we adjusted to the idea of having a son. Like most other pregnant women, I began to enjoy being pregnant and envisioned having a healthy full-term baby. I remember being worried about catching some terrible germ from one of my NICU patients but realized that I was probably creating things to worry about. My husband kept telling me I was overthinking things.

Then at twenty-four weeks I noticed twinges of pain low down in my uterus, off and on in the afternoons. The pains were worse after a long or difficult day in the NICU, especially after standing to perform procedures. If I went home and put my feet up, the pain would usually subside. All my prenatal check-ups had been normal until my premature labor commenced in earnest at twenty-five weeks gestation.

After rounding in the NICU one morning, I was feeling particularly tired, and my pelvic pains were really hurting. I ran into my own obstetrician, a good friend and colleague. He dragged me by the hand to L&D to examine me. I did not expect what happened next. After finding that my cervix was dilated and I was in active preterm labor, he admitted me to the hospital. I was totally unprepared for that, and really no mother can ever be prepared for the trauma of a pregnancy complication. All I could think about was having a tiny premature baby boy who would require NICU care for months on end. Of course, I imagined the worst-case scenario because I understood the long haul of intensive care that a tiny premature infant must endure for survival. I dreaded the idea of watching my son go through this. Also, I feared the possibility of raising a disabled child.

I called my husband, who came straight away to find me in L&D. My labor room was freezing, and he found me shivering with cold and fear. He asked the nurses to get me a blanket and a sedative. Then he went over to the NICU to see which neonatologist was on call, who would be working with us if our son delivered prematurely during the night. It was Trevor, the same partner who had disagreed with my decision to support those parents in their choice to let their son pass at twenty-three weeks gestation. Oh, God, I thought. Trevor and Phillip talked and unbelievably, he told Phillip that he would do everything possible for our son if he was born that evening, even if we disagreed with his approach. I did not understand why he would not respect our wishes. Now I was more bewildered than ever.

Phillip sought out other professional opinions while I fretted in my room. In the dark and chilly labor suite, I lay crying, imagining the worst as I listened to David’s soft heartbeat on the uterine monitor. Another one of my older partners, a friend of Phillip’s from residency, popped in to visit and caught me crying. He smiled and asked, “Susan, what are you so upset about?” I didn’t answer at first and felt somewhat baffled that he even asked. Did I need to justify my fears? Wasn’t I allowed some normal maternal tears? Of course, he tried to reassure me that everything would be alright, but I remained terribly frightened, and he stepped out to find my husband.

In our personal encounter with possible preterm delivery, we got lucky, and all turned out well. My aggressive perinatologist, a high-risk obstetrician, and friend expertly directed my care. Two powerful medications effectively stopped my premature labor, and I received antenatal steroids to mature my son’s lungs and brain. My obstetrician also prescribed valium for me, intermittently, since I felt trapped in a net of excessive worry. Of course, then I worried about possible effects of valium on my unborn son.

After two days, once my preterm labor was deemed under control, they moved me to a room on the obstetrical floor. My private room was sunny and comfortable, but too close to the NICU. As a result, I received too many visitors during the day, and it became impossible to rest. So, the nurses taped signs on the door to keep visitors out. After a hospital stay for several weeks, I was permitted to go home.

At home I was able to rest, read, and listen to soothing New Age music. I imagined myself to be a large vessel, a pregnant uterus, whose purpose was one thing - to make this baby. I had never imagined myself to be something so simple and yet so complex. Phillip cooked and brought meals to our upstairs bedroom. His mother came to help us out for several weeks since I was instructed to stay in bed except for bathroom breaks. Surprisingly, it was not easy to lie around and do nothing all day. It was certainly not easy to be pleasant with my mother-in-law hovering over me, but I put great effort into being nice to her.

I remained on bed rest at home for several more weeks while Phillip took very good care of me. David was delivered at thirty-six weeks gestation, late one Friday night, only a month before my due date. Although we stayed in the hospital for a week, he never needed artificial surfactant or NICU care, and he had a perfectly normal outcome. The experience of being a patient myself, particularly a pregnant-mother-patient, taught me a tremendous lesson. The degree of helplessness that you feel in that situation is difficult to describe. Your powerlessness seems inexorable if you are a trained and competent person used to getting things done or accustomed to solving problems.

I had witnessed many irresponsible, unwed, teen mothers with little to no prenatal care give birth to perfectly healthy full-term babies, without even trying. Here I was an educated neonatologist, who had done everything correctly, and yet I could not carry a baby to term. My feelings of inadequacy and vulnerability during that time were boundless. I felt like a big fat failure throughout most of my first pregnancy, and I was determined to make up for that by being a perfect mother.

Later, throughout my years of clinical practice, as I met and counseled other mothers anticipating a preterm delivery, it was easy to empathize with them. I understood the feelings of fear and helplessness they endured through that most traumatic time. Over the years, I gladly shared my own story with mothers in preterm labor, or those with premature rupture of membranes, as they lay in hospital beds, receiving various kinds of treatment, awaiting the birth of their own baby. When I recounted my story to them, many of them felt understood and grateful. Sometimes even the smallest sharing of feelings provided them with comfort.